My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

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Healing Progress

Healing Continues

I saw my ENT yesterday, two weeks after surgery. I’ve not felt good this last week, but he is pleased with my healing progress. I had more noticeable face pain and pressure, but I did quit the pain meds. I’ve been sneezing a lot this week, too. And my throat stays sore from all the post nasal discharge. There’s still some minor bleeding. And I have had a sensation of something being in my right nostril way up high. He numbed my nostrils and used a suction tool to pull out some “crusting”. Crusting is evidently the medical term for scab. Now that the numbing has worn off, I still have a sensation of something in there up high on the right.

Frontal Sinuses Occluded

Even though he is very pleased with the healing progress, he is still very concerned about the totally blocked upper frontal sinuses. He says it’s not unusual to have mucous filled sinuses. But it is unusual for there to be absolutely no air at all in them. And with the drain opening closed up with bone tissue, there’s no way for those sinuses to drain at all.

So I’ve asked him to refer me to a UAB doctor who can do the more involved surgery required to drill through the bone into the frontal sinuses. Hopefully he can find someone who would coordinate surgery with the UAB Oculoplastic surgeon I’ve already scheduled surgery with. I’m hoping each of them can operate while I’m under one round of anesthesia. That way I can have one recuperation to deal with. I’d be more than willing to postpone the tear duct surgery if it means getting both these surgeries done on the table in one session.

I know the inflammation aggravates my Mitochondrial Disease issues. So I’m trying to stay as optimistic as I can that God will work out all this facial mess and allow me to heal properly.